Mile #12 with Basal Cell Nevus Syndrome

It is surgery day. November 19 and the decision is made to leave the area over my ears until after the cancer is removed from my eyelids in December. The areas over my ears will be done in January, 2014. 

The new patient I mentioned earlier had her first Mohs today. Her cancer was over 3.5 cm long before surgery. She did great. I was able to be with her through the procedure and as large a her cancer appeared it was all bark and no bite. One stage and she was done for the day. She started after me and left 3 hours before me. I am very thankful that I could be there for her. My husband and I enjoyed visiting with her and her brother. I believe we have made two new life long friends.

The last 3 spots on my scalp appear innocent enough. Out of the three only one is raised enough to feel it with my fingers. As the saying goes, "a picture is worth a thousand words".

Here are the next three sites in my journey.

Spot one is the only one that I could feel. It's located on the left parietal scalp. This area took 2 stages and is clear. The wound ended up being 1.3 x 1.5 cm.

Mile #12 Spot 1 After 

Mile #12 Spot 1 Before

 

Mile #12 Spot 2 Before

Mile #12 Spot 2 After

Spot two is not raised at all. The before picture shows only a slightly discolored area located on the left occipital scalp.
                                             
















 This spot also took 2 stages and is clear. The wound ended up being 1.2 x 2.1 cm.      







                                    

Mile #12 Spot 3 Before

Spot three was barely raised. I could only feel it when I pushed at just the right spot. It looked like a pale freckle. Isn't that an understatement. It's located on the occipital scalp.

Mile #12 Spot 3 After

 This spot took 4 stages. It was not nearly as deep as most cancers on my scalp but wide under the surface. The wound ended up being 1.7 x 2.5 cm. 

The pink in the lower section of the picture is the new skin from Mile #9. Literally a hairline separated the two areas of cancer. 

I do not sleep well the night before surgery. This time was no exception. I usually have to pray and work to get into my happy place. Today I woke up with a warrior attitude. I even had Ephesians 6 on my mind. 

That being said...


Take Away Nugget:  Always be dressed for success. Especially with your attitude. 
                                             

Headed for Mile #12 with Basal Cell

I have been a little out of touch in the aftermath of Mile #11. My head resembles what I believe the moon's surface to look like. Somewhere in the mix my body is back at riding the tilt-a-whirl. My nausea has returned and brought dizziness to the party. The medicine I have for nausea does not help. I have not been in pain since 2 days post op. Yet the pain pills help the dizziness that in turn eliminates the nausea. Go figure.

I am used to working full time plus some this time of year. However, I have to say keeping busy is a chore while dealing with dizziness, nausea, etc.  My librarians and I are on a first name basis. I am reading a book every 2-3 days by authors I have not read before. The downfall is I  am getting authors, story lines and characters all mixed up.  Maybe I should write a novel myself. Although having vampires take over viking ships in the reign of King Alfred and get shipwrecked in South America only to raid wagon trains headed for the gold rush in California doesn't seem too convincing.

The big bonus for me at this point is all miles are healing great. All miles that have new skin now have new hair coming in if they are supposed to.  I am often asked if my hair will come in differently than it was before. At this point I am not on any medications that should alter my hair. However, the depth of several of my miles may have destroyed the ability of new hair follicles to form.  Time will tell.

Here are updated photos of Mile #6 through Mile #11. Mile #8 is not pictured as the suture line is not really visible in a photograph. My hair is still damp from the shower. At this point I can shower without any bandages. These photographs were taken 11/12/13 one week after Mile #11.

Mile #6 with remnants of Mile #2 at top

Mile #7

 Mile #6 is healed enough to be naked. I cover when going out and at night to keep it protected.















Mile #7 is gellin nicely and has little fuzzy hair just coming in at it perimeter.

Mile #9 Left

Mile #9 Right

On Mile #9 both sites are gellin and stay covered most of the time. If I am not going out I will clean both sites and leave them naked until I go to bed in the evening.

Mile #10 is the 4 spots on my neck. All have healed. I had almost 12 inches worth of stitches with the four spots we did for Mile #10. Two sites have puckered. My surgeon and I are watching those to see if with time (and cocoa butter) they smooth out. My camera does not show it as clearly as the camera the surgeon uses. I will have my nurse take a  picture to share with Mile #12.

Mile #11

Mile #11 is the reason I am going to scarves. This is why I think of the moon scape. All three are healing great and still require bandages 24/7. That is Mile #7 in the left portion of the photograph. The other thing my surgeon did for me in Mile #11 was remove 13 skin tags from under my arms.  Out of the 5 on the left and 8 on the right two have come back basal cell and will get excised later. Yes this was a vanity move on my part. Go figure all the nonsense visible on my head and I wanted my under arms clear.  I want to wear some sleeveless tops next summer. I have to have something to look forward to right?

I will spare you the photographs of my armpits except for the two that turned up basal. Once I see the maps Tuesday I can crop the pics to show only the bad guys. 

Maps? Yes, I heard you. Mohs surgeons have nice little body outline drawings (maps). Enlarged ones for the head, left side and right side. They mark and number all surgical spots and also update each one to accurately show each stage as needed.

Every surgeon may be different in how they mark. This is the first time I have gotten involved with looking at all my maps. They draw the area on the map that they remove with each stage and mark lines through it something like a compass. The stage removed is then placed in a dish with matching makings and taken to the lab. Then the stage is frozen and put onto slides. The technician knows exactly where each slide comes from based on its marking on the map.

Another question I get frequently is related to the size of the sites before and after the surgery. I flunked my due diligence there and have not documented that information. So Tuesday I will have my notebook in hand and have my nurse pull my chart. The surgeons always take a measurement before they begin and before they close or bandage the site at completion of surgery. 

So here I sit a day away from Mile #12. This is my last surgery for November. I still have the areas around my ears to do and one maybe two small spot on my scalp to address. My eyes have been scheduled for December.  There is no way to finish my head, face and neck before we welcome 2014. What is the saying, "we gave it the old college try".

Thanks again for all your prayers and support. I am still learning all the technology of our century. If you are trying to reach me please use myjourney.bccns@gmail.com and I will get back to you.

Take Away Nugget: All external motivation is temporary. Talk to yourself. Say only good positive things. Chances are you are the only person you truly believe anyway.

Mile #11 with Basal Cell

It is amazing the questions that surface with this cancer. I was having my eleventh surgery session this past Tuesday and was asked by a fellow patient "Why would you put yourself through this?"

Why indeed. Ignoring this condition is not an option. In 2005 I had only 3 spots on my back. Two of which I had removed. None of those were larger than a pencil eraser and they were limited to my right shoulder blade area.  The spot on the far right was the only one remaining in 2005. This is what I have to look forward to in 2014.

The sadder truth is I am guilty of ignoring my body. I was unaware of most of these spots as they are flat. I cannot feel them. They are all cancer and some are probably sharing basement condos.

In my last post I discussed my eyes. It looks like my Christmas present to me will be my eyes. The surgeons have decided they can do both eyes and my forehead in 4 procedures. So Thursday Dec. 12, I will have my left eye Mohs performed and Friday Dec. 13, I will have the reconstruction done. The following week I will repeat that schedule with my right eye and forehead. With that in mind and another surgery on Nov. 19th. I could meet my goal of having my head and face clear by the end of the year.

 For Mile #11 we shaved more of my head and got rid of three more lesions across the top. The tuft of hair in the top of the photo is the remains of my bangs.

Mile #11 Pre op



The spot on the top left required only one stage to clear. The spot on the bottom required two stages. The spot in between the two required three stages. All three are clear of cancer. 

Mile #11 post op

My scalp now resembles the moon's surface. My mom and my aunt blessed me with some scarves. So scarves it will be for a while. The bright side is there is evidence of new hair growth on all the previous miles on my head. That is cause for a happy dance. No, You Tube is not prepared for all this happy dancing. 

I cannot thank my friends and family enough for their support. I have had the pleasure of meeting some incredible health care professionals. I have been able to speak to parents with children newly diagnosed with BCCNS. 

God has put me in the path of a woman that has this same type of cancer and is paralyzed with fear. I will be with her for her first surgery in 10 days. She calls me her angel. I do not see myself as an angel. I am outgoing and can be loud. Yet until recently I would have said I was mild mannered even complacent. Now I see myself as a warrior. Ok so some of God's angels are indeed warriors. This is a war no one can afford to loose. If I loose this war it will not be from lack of knowledge or the use of the power gained by knowledge.  I also intend to fight for anyone put in my path that is affected by skin cancer.

Take Away Nugget: People don't care how much you know until they know how much you care.

Where do I stand with BCCNS?

The eyes have it. I met with another specialist this past Tuesday. This surgeon is an eye reconstruction specialist. He is one of only 300 in the US. 

Now I feel really special. I have had a few days to brew over my discussion with him. So today I can objectively look at what needs to happen. Tuesday night through Wednesday not so much. 

Here's the deal. Every surgery I have is using local numbing agents. I hate needles. I try to stay in my happy place while enduring the 30 -50 sticks it takes through out the procedures to keep me pain free. 

Now we are talking about removing cancer from my eyelids. Due to the progression of the disease on my eyelids we will have to do one eyelid at a time. My forehead will have to be a separate procedure. Each eyelid and my forehead will also have to undergo independent reconstruction procedures as well. That is six surgeries to deal with my eyes. In the photograph, you cannot even see all the basal cells. Some are so small they will get the laser treatment during reconstruction. Another new discovery. On my left eye there is that pronounced bump. I assumed that was basal. Of course not. One of the symptoms all be it rare to BCCNS is this cyst type growth in the eyelid. The one that is pronounced is calcified and will get surgically removed from the inside of my eyelid during reconstruction. There are 3 total that will be dealt with at the time we do reconstruction.

 

 

Wed. am after not much sleep

The goal in May was to get my head and face clear before the end of the year. In doing the math I have four surgery days left. However, my eyes require 6 procedures and I still have 6 areas on my scalp that need attention. This all came to me in a mental overload Tuesday evening. 

I am a woman of faith. Yet I managed to break all my own rules. I took my eyes off all the blessings I have had so far and landed in a self induced valley full of fear, doubt and anger over my situation.

Thank God my eye specialist is pleasant mannered and nice to look at. No worries my husband is the one that told me to count this as a blessing. If you have to be nose to nose with someone for 30 minutes at a time it does not hurt.

Take Away Nugget: When you find yourself in deep water. God doesn't intend for you to drown. He expects you to be cleansed.

 

10 1/2 Miles of Healing With Basal Cell

I have chosen to continue my education courtesy of the web. I like to understand what is going on with my body. I have had this article on the phases of wound healing for some time. Being close to midway in my marathon seems a good time to share it. I've noted how I've renamed each phase in my blog.  Following the article I will take a look at where my past 10 miles are today. A reminder the pictures may be graphic. Reality is truly more real than fiction.

This is surgery day stuff
Hemostasis:
Once the source of damage to a house has been removed and before work can start, utility workers must come in and cap damaged gas or water lines. So too in wound healing damaged blood vessels must be sealed. In wound healing the platelet is the cell which acts as the utility worker sealing off the damaged blood vessels. The blood vessels themselves constrict in response to injury but this spasm ultimately relaxes. The platelets secrete vasoconstrictive substances to aid in this process but their prime role is to form a stable clot sealing the damaged vessel. Under the influence of ADP (adenosine diphosphate) leaking from damaged tissues the platelets aggregate and adhere to the exposed collagen. They also secrete factors which interact with and stimulate the intrinsic clotting cascade through the production of thrombin, which in turn initiates the formation of fibrin from fibrinogen. The fibrin mesh strengthens the platelet aggregate into a stable hemostatic plug. Finally platelets also secrete cytokines such as platelet-derived growth factor (PDGF), which is recognized as one of the first factors secreted in initiating subsequent steps. Hemostasis occurs within minutes of the initial injury unless there are underlying clotting disorders.


This is what I call "swellin"
Inflammation Phase:
Clinically inflammation, the second stage of wound healing presents as erythema, swelling and warmth often associated with pain, the classic “rubor et tumor cum calore et dolore”. This stage usually lasts up to 4 days post injury. In the wound healing analogy the first job to be done once the utilities are capped is to clean up the debris. This is a job for non-skilled laborers. These non-skilled laborers in a wound are the neutrophils or PMN’s (polymorphonucleocytes). The inflammatory response causes the blood vessels to become leaky releasing plasma and PMN’s into the surrounding tissue. The neutrophils phagocytize debris and microorganisms and provide the first line of defense against infection. They are aided by local mast cells. As fibrin is broken down as part of this clean-up the degradation products attract the next cell involved. The task of rebuilding a house is complex and requires someone to direct this activity or a contractor. The cell which acts as “contractor” in wound healing is the macrophage. Macrophages are able to phagocytize bacteria and provide a second line of defense. They also secrete a variety of chemotactic and growth factors such as fibroblast growth factor (FGF), epidermal growth factor (EGF), transforming growth factor beta (TGF-__ and interleukin-1 (IL-1) which appears to direct the next stage.


This is what I call "gellin"
Proliferative Phase ( Proliferation, Granulation and Contraction):
The granulation stage starts approximately four days after wounding and usually lasts until day 21 in acute wounds depending on the size of the wound. It is characterized clinically by the presence of pebbled red tissue in the wound base and involves replacement of dermal tissues and sometimes subdermal tissues in deeper wounds as well as contraction of the wound. In the wound healing analogy once the site has been cleared of debris, under the direction of the contractor, the framers move in to build the framework of the new house. Sub-contractors can now install new plumbing and wiring on the framework and siders and roofers can finish the exterior of the house. The “framer” cells are the fibroblasts which secrete the collagen framework on which further dermal regeneration occurs. Specialized fibroblasts are responsible for wound contraction. The “plumber” cells are the pericytes which regenerate the outer layers of capillaries and the endothelial cells which produce the lining. This process is called angiogenesis. The “roofer” and “sider” cells are the keratinocytes which are responsible for epithelialization. In the final stage of epithelializtion, contracture occurs as the keratinocytes differentiate to form the protective outer layer or stratum corneum.

This is well into what I call "getting to go naked"
Remodeling or Maturation Phase:
Once the basic structure of the house is completed interior finishing may begin. So too in wound repair the healing process involves remodeling the dermal tissues to produce greater tensile strength. The principle cell involved in this process is the fibroblast. Remodeling can take up to 2 years after wounding and explains why apparently healed wounds can break down so dramatically and quickly if attention is not paid to the initial causative factors.

Facts courtesy of Curad Products.

I am going to recap all my previous miles.  This will be the last we focus on Miles #1 to #5.

Mile #10 Surgery date October 22, 2013

Stitches are always awesome to deal with. Pain is normally a two day ordeal requiring prescription pain meds. After that regular Tylenol is fine. This is how it looks today.

Mile #10 left and back

Mile #10 right

Four spots all with stitches. Had a resident in the office that stitched me for the first time.  All other surgeries where stitches were an option were done by my regular nurse. Not sure whyI have puffiness and gaps on the sites. Hopefully it is just because the neck is always moving and not due to a different "stitcher". Not entirely happy with this look. But hey it is naked and that is always a blessing. I use a thin layer of antibiotic ointment on these for the next week. At two weeks post op I switch to cocoa butter cream on my sites that had stitches.

Mile #9 Surgery date October 8, 2013

This is how it looks today. Both sites are gellin nicely and the one on the left is close to being naked during the day. My wound care is petroleum jelly, non stick gauze pads and regular gauze for padding. I completely enclose the bandage with tape to seal the sites until they can go naked.

Mile #9 right scalp

Mile #9 left scalp behind ear

 For some reason no matter what angle my husband uses the picture of the left side comes out grainy. I still think it is because he thinks the wound site looks like Mick Jagger with a mustache. He can't even look at it with a straight face.


Mile #8 Surgery date September 24, 2013

There were two sites for mile #8. The first being under my left eye. That site is not recognizable in photographs. WooHoo. The second site is my left jaw area pictured below.
The faint line from my side burn down is all that remains of Mile #8. Good makeup and you won't know its there.

Mile #8 along the front of ear

Mile #7  Surgery date September 10, 2013

This wound site is still gellin. You may recall it was very large compared to other sites. When we tackled this area it was a solo act due to its size. It has not produced much new hair along its edges.  This concerns me. 

Mile #7 right scalp towards crown

Mile #6 Surgery date August 20, 2013

This site is naked during the day and is healing nicely. I use antibiotic ointment day and night and cover this site with a nonstick pad at night. According to my husband, Mile #2 at the top edge of Mile #6 makes the site look like a paisley. The temple area of this site is growing new hair. The area above my ear not yet. We will be looking closer at the area with hair over my ear as there is something there the surgeon may want to biopsy. At first this site had my brow line raised but it has since relaxed.

Mile #6 bottom of site & Mile #2 top of site

Mile #5 Surgery date July 30, 2013

This site is only partially visible now. I use cocoa butter cream on it. No I do not know of any scientific evidence of this helping to lessen scarring. To me it appears to make the skin less tight and stiff. Mile #5 is the two dimpled areas on my cheek the third site you can no longer see in pictures. The long suture line in front of my ear is the second part of Mile #2. There is  more cancer remaining in front and over my right ear that is visible in this picture. That will be a future surgery mile. The scar on my right side almost mimics my left giving me a mini facelift. Thi is an unforeseen bonus.

Mile #5 dimples in cheek & Mile #2 suture line

Mile #4 Surgery date July 16, 2013 

My chin. It is no longer visible in pictures.

Mile #3  Surgery date July 2, 2013

My right forehead goes naked during the day. I do cover this site at night with antibiotic ointment and a nonstick pad. There is new skin visible between Mile #3 and Mile #7.  There is however, no new hair growth visible between the two.  To date there are four areas on my head that may or may not grow new hair due to the depth of the wound sites.
Yet another reason NOT TO IGNORE ANYTHING ABNORMAL ON YOUR BODY.

Mile #3 showing Mile #7 at the top

Mile #2 Surgery date June 18, 2013

See pictures from miles #5 and #6. Both of these sites have been naked for some time and get the cocoa butter cream treatment.

Mile #1 Surgery date June 4, 2013

Mile #1 right side of my nose

Mile #1 was my nose. As a reminder, only one of the three marked areas was even discolored or raised  before surgery. 

 

The area between the bottom two spots is the deepest and wrapped slightly into my nostril. That area is what is pulled taught today and will require reconstruction in the future. All three of these spots shared what I call the basement condo. Without removing a stage at a time and doing the pathology you cannot tell how far the cancer goes. With a Q-tip in my nostril I could see a small area where it went all the way thorough. Lovely. My co workers told me I should have taken advantage of the situation and gotten a diamond stud for my nose. I just did not see diamonds on this.

Take Away  Nugget: Happiness is not something you postpone for the future; it is something you design for the present.